Introduction

Summary

Pushed by societal challenges and technological innovation, healthcare is changing. It is moving from a paper-based to a paperless environment. What used to be a one-person metier has become a team-based and interdisciplinary profession. Decision support and automated decision-making have become a reality. Patients are confronted with healthcare models relying on value-driven strategies, evidence-based medicine and a data-driven economy greedy to re-use data. A range of economic-societal challenges caused by changing demographics and rising costs confront healthcare systems with the need to care for more people with fewer people. Additionally, attempts are made to foster patientcentred care and personalised treatments. Personal health records, personalised medicine, patient-centred care, patient-centred reviews, and person-centred support planning, are just a few examples of terms often used in the context of modern healthcare systems.

Amidst these changes, is the patient and their rights to privacy, data protection and autonomy.

When considering the transformations in Western healthcare, especially during the last five decades (late 1970–2020), one cannot ignore the impact of the patient’s changing role. Western healthcare is not anymore a doctor-knows best discipline. Patient autonomy is considered of great importance. The patient is empowered in the decision-making process about his health, and patientcenteredness has become a fundamental premise for what is considered highquality care. This evolution in the patient’s role fits the general tendency, which arose in the late 1970s, towards citizen power, individual autonomy and more rights for women, children and other vulnerable groups. Increasingly, the patient’s right to autonomy was embedded in legal frameworks. Concepts such as informed consent were included in frameworks on patients’ rights to ensure their choices are respected.

The question arises how to match the development and inclusion of phenomena that characterise the predominant ethos in modern healthcare systems, such as e-health and personalised medicine, with the concepts of autonomy, privacy and data protection. That matching exercise is deemed essential because the successful adoption of information and communication technology (hereinafter ICT) in healthcare depends (in part) on how the public’s concerns about data protection, privacy, confidentiality, security and autonomy are addressed.